Welcome

The Washington University Department of Pathology and Immunology and the International Pleuropulmonary Blastoma (PPB) Registry would like to invite you and your family to attend the first PPB Family Weekend to be held during Memorial Day Weekend May 26-28, 2006, at the Hyatt Regency Hotel at Union Station in St. Louis, Missouri. We expect that this will be a great opportunity for fellowship and information sharing among children, families, physicians and supporters of PPB research. Most of the costs of attending the meeting (hotel, food, social events) will be covered by our generous sponsors. More information will follow about our attempts to find additional funds to support travel to and from the meeting. Please include this meeting in your summer vacation plans. We look forward to seeing you in St. Louis!

2006 PPB Family Weekend Objectives

The primary objectives of this PPB Family Weekend are to gather together all of our important resources devoted to treatment, research and support of children with PPB and their families and to share our sense of hope for a more positive future beating this disease. Specifically:

· The scientific sessions will provide a forum for the presentation and discussion of current diagnosis, management and new discovery regarding PPB. We will also discuss the progress toward finding a cause for PPB; the first step toward finding a cure. Question/answer sessions will follow each speaker.

· The small group sessions will provide an opportunity for children with PPB, their siblings and families to share experiences with others and discuss topics such as: coping with stress, knowing what to expect from your child, how siblings may react, dealing with financial strains, and more.

· The social events, supervised playtime, and free family time will provide opportunities for children with PPB, their siblings and their parents to meet other families affected with PPB and offer support and friendship.

Program Highlights

We have a very exciting program planned. Join us Friday evening for our welcome reception where we can meet each other and enjoy great food and drink. On Saturday morning Dr. Louis (Pepper) Dehner will be on hand to tell his story of how PPB was discovered. Dr. Jack Priest will give a presentation about the PPB Registry and discuss the major lessons we have learned over the past 20 years. He will also talk about the Registry’s international outreach efforts, PPB research and the important contributions of our PPB families and charitable supporters. We will have plenty of time for questions and answers. We also have an outstanding group of child psychologists from St. Louis Children’s Hospital supporting our meeting. They will facilitate small group discussions about issues important to you and your family. Saturday evening promises to be really fun for all as we have rented out the St. Louis Science Center. On Sunday, Dr. Alison Whelan, a medical geneticist, will talk about what we know about the genetics of some childhood cancers. Dr. Ashley Hill will then talk about why this is a very crucial time in the study of PPB and the important work that remains to be done. With the recent advances in technology, the recruitment of additional scientists to collaborate with the PPB Research team, and the continued support from patients, families and host institutions, we are now prepared to take the next step toward understanding the cause of PPB. This research will help us understand how and why PPB develops, and hopefully gives us insight into new approaches to therapy. We will turn the meeting over to families who wish to share their thoughts with the rest of the group. To wrap up we will then have a very special tribute to all of our children with PPB.

PPB Family Weekend

May 26-28, 2006

Hyatt Regency at Union Station, St. Louis, MO

Hosted by Washington University Department of Pathology and Immunology and

The International PPB Registry

Program

Friday, May 26, 2006

5:00 to 8:30 p.m. Welcome Reception and Registration

Saturday, May 27, 2006

7:30 to 9:00 a.m. Breakfast

9:00 to 9:05 a.m. Welcome to St. Louis

D. Ashley Hill. M.D., Washington University

9:05 to 9:45 a.m. The Evolution of PPB as a Diagnosis: An Eleven Year Story

Louis (Pepper) Dehner, M.D.

Washington University Department of Pathology and Immunology

9:45 to 10:30 a.m. Updates from The International PPB Registry

John R. (Jack) Priest, M.D., The International PPB Registry

10:30 to 11:00 a.m. Snack Break

11:00 to 11:45 a.m. Question and Answer Session with Drs. Priest and Dehner

11:45 to 1:00 p.m. Lunch

1:00 to 1:30 p.m. What Do We Know About Families Coping With a Child’s Serious

Medical Illness?

Susan Sylvia, Ph.D., child psychologist

St. Louis Children’s Hospital

1:30 to 4:00 p.m. Topical small group discussions

Dr. Susan Sylvia and Dr. April Neeson and Staff

Parents, children, siblings, all

6:15 to 9:15 p.m. Dinner Event at the St. Louis Science Center

Sunday, May 28, 2006

7:30 to 9:00 a.m. Breakfast

9:00 to 9:30 a.m. Genes and Childhood Cancer

Alison Whelan, M.D., Medical Geneticist

Co-Director Hereditary Cancer Core, Siteman Cancer Center

9:30 to 10:00 a.m. Finding the Cause of PPB: Where Do We Go From Here?

D. Ashley Hill, M.D.

Washington University Department of Pathology and Immunology

10:00 to 10:15 a.m. A Few Words About the PPB Genetic Study

Jennifer Ivanovich, M.D., Genetic Counselor

Hereditary Cancer Core, Siteman Cancer Center

10:15 to 10:45 a.m. Snack Break

10:45 to 11:00 a.m Tribute to Children with PPB

11:00 to 12:00 p.m. And Now a Word From Our Families

Family presentations

12:00 p.m. Meeting wrap up

D. Ashley Hill, M.D.

12:00 to 3:00 p.m. Genetic study enrollment

12:00 p.m. Pick up your box lunches – free time for family sightseeing

Activities for Kids

Children are welcome to attend any of the sessions but we also have activities designed especially for them to be run concurrently. We will have a playroom with toys, art activities and child life experts adjacent to the meeting rooms. For older kids we are tentatively planning a field trip to one of St. Louis popular attractions. Our Saturday evening event at the St. Louis Science Center is sure to be a hit with kids (and adults) of all ages. We also hope that you will be able to take advantage of free time on Sunday afternoon to enjoy many of the kid-friendly sites of St. Louis.

Venue and Accommodations

The meeting will be held at the Hyatt Regency Hotel at Union Station (www.stlouis.hyatt.com). The Hyatt Regency is a AAA four diamond hotel in downtown St. Louis located in historic Union Station (http://www.stlouisunionstation.com/). The hotel has an outdoor pool. Through contributions from Washington University and others, rooms will be provided complementary to PPB families attending the meeting on Friday and Saturday. For room reservations, please call Dawn Bracamontes (314) 362-0107 at Washington University Department of Pathology. Dawn will coordinate your reservations with the hotel group sales manager. If you intend to stay over Sunday night please let us know as soon as possible as this will involve additional booking with the hotel.

Conference Planners

D. Ashley Hill hill@path.wustl.edu (314) 454-8854

Dawn Bracamontes dbracamontes@path.wustl.edu (314) 362-0107

Gretchen Williams Gretchen.Williams@childrensmn.org (651) 220-6772

Conference Sponsors

The meeting is co-sponsored by the Washington University Department of Pathology, St. Louis Children’s Hospital, Siteman Cancer Center and the International PPB Registry. Washington University Medical Center and the International PPB Registry have worked together in the study of PPB for nearly 20 years. It is our honor to host this meeting for all of the children and families that have contributed to this effort. We also like to thank all of the PPB parents and Registry supporters who are contributing their time and experience to the organizational efforts. Through contributions from Washington University and other generous sponsors we will pay for hotel, food and social event costs. The PPB Foundation (see below) is also working on sponsorship of travel costs to and from the meeting. More information will become available in the next month or so. Please feel free to call us at the numbers above for updates.

The International PPB Registry

The Registry is led by Dr. Jack Priest. He and his colleagues, including oncologists, pathologists, pediatricians, scientists, and data analysts from many institutions, have been working together for almost 20 years to improve the diagnosis and care of children with PPB. The Registry’s main bases of operation are the Children’s Hospitals and Clinics of Minnesota, St. Paul, MN and Barnes-Jewish and St. Louis Children's Hospitals, St. Louis, MO. The mission of the Registry is to enroll all patients diagnosed with PPB, to provide expert pathologic review, and to collect clinical and outcome information. In turn, the Registry provides clinicians and families with treatment recommendations based on rigorous study of all available data. To learn more about PPB visit the Registry website at http://www.ppbregistry.org. There are no charges for any services from the Registry. The Registry also supports clinical, basic and translational science initiatives designed to find the cause of PPB. The International Pleuropulmonary Blastoma Registry’s research program is supported by Children’s Hospitals and Clinics of Minnesota and Washington University Medical Center. It has been funded since 1987 by an annual charity tennis tournament, the Pine Tree Apple Tennis Classic, dedicated to research in pediatric oncology, and by the Theodora H. Lang Charitable Trust. It is entirely non-profit, interested only in clinical and scientific advancements.

The PPB Foundation

The PPB Foundation was founded by Greg & Sharon Manassa, parents of Danielle, who at 3 ½ years old was diagnosed with Type III PPB. From the point where their daughter’s oncologist told them in May, 2001 that “we’ve never seen or heard of this type of pediatric cancer” through successfully battling brain metastasis almost two years later, they constantly struggled with the feelings of isolation associated with such a rare childhood cancer. Unlike some other cancers, there were no “support groups” or networks where PPB parents could get together to talk about the unique emotional challenges associated with such a rare childhood cancer.

During and after their daughter’s treatment, the Manassa’s vowed to learn as much as possible about PPB and work to provide emotional support to other PPB families. In 2005, the www.PPBFoundation.org website began its development. As it continues to grow, the website will serve as a central point of contact for PPB families worldwide to meet, share experiences and provide mutual support and understanding from the point of diagnosis, treatment and long-term follow-up.

Transportation

St. Louis Lambert International Airport is a hub for American Airlines and is served by most other major airlines including Southwest Air. The airport is approximately 30 minutes from the Hyatt Regency Hotel. Taxi service to the hotel is available for approximately $35.00. There is no airport shuttle to the hotel. St. Louis does have a rapid transit system (Metrolink) that covers many of the key sites including downtown and the airport. It has a stop (Union Station stop) at the hotel. Rental car service is recommended for guests who wish to travel beyond the immediate downtown area. Parking is available at the hotel.

What to do in St. Louis

There is so much to do in St. Louis in the springtime. Explore the famous 630 foot St. Louis Arch marking the city’s riverfront as the gateway to the west (http://www.gatewayarch.com/). The Museum of Westward Expansion is located at the base of the arch. The museum is known for its collection of Lewis and Clark memorabilia. Don’t miss the short movie about the building of the structure. If you are brave, a tram ride can take you all the way to the top where you can look out at the Mississippi River and downtown St. Louis. The St. Louis Zoo is routinely voted one of the best zoos in the world and even better – it’s free! Visiting the zoo is a great way to spend the day (http://www.stlzoo.org/). The zoo is located in historic Forest Park home of the 1904 World’s Fair and 1904 Olympics (http://stlouis.missouri.org/citygov/parks/forestpark/). Other attractions in the park include the St. Louis Science Center and Planetarium (http://www.slsc.org/), the St. Louis Art Museum (http://www.stlouis.art.museum/), three golf courses, the Missouri History Museum (http://www.mohistory.org/content/HomePage/HomePage.aspx), and a boathouse restaurant with paddleboats (http://stlouis.missouri.org/citygov/parks/forestpark/boathouse.html). One of the best attractions for children in St. Louis is the Magic House http://www.magichouse.com/. The Magic House was recently named the #1 attraction for child appeal in the United States by Zagat U.S. Family Travel Guide. Just a short 20 minute ride from the hotel will take you to this unique, hands-on museum for children of all ages. For the adventurous child who doesn’t mind getting a little dusty, visit the City museum in downtown St. Louis filled with slides, caves and unique exhibits (http://www.citymuseum.org/home.html). Another great attraction is Grant’s farm, a 20 minute drive from the hotel. At Grant’s farm children can visit a scaled down version of the zoo and see roaming buffalo and animal shows (http://www.grantsfarm.com/). Grant’s farm admission is free but there is a charge for parking. If you have the luxury of staying an extra day or two there is a Six Flags Amusement and water park (http://www.sixflags.com/parks/stlouis/index.asp) approximately 35 minutes from the hotel. St. Louis is the home of the National League Central Division Champion St. Louis Cardinals (http://www.stlcardinals.com). The Cardinals are in town on Monday, Memorial Day 2006 as they host the National League Pennant-winning Houston Astros.